A Brave Advocate for Huntington’s Disease

story and photo by Jim Bridges, February 2012

Jamie is a rather shy, quiet girl in fourth grade. She lives with her mom, Terrie Decker, her dad, and an older sister, in Carnation, Washington, where she attends elementary school. Until recently, she had plenty of friends within her class and around the neighborhood. This winter, one of the neighborhood children, a year older than Jamie, started spreading rumors and talking about Jamie and her family.

The fifth grader began telling other children that Jamie’s family has a disease, that you should stay away from her or you might catch it. That was bad enough, but then the fifth grader started spreading rumors about Jamie on the playground at school. Jamie’s classmates began avoiding her, and soon, no one would play with her on the playground. It bothered her so much that she came home and told her mom what had happened with this fifth grader.

Jamie’s mom was understandably upset when she heard the story, and Terrie immediately went to the school and spoke to Jamie’s counselor. She told the counselor what had happened to Jamie, while the counselor listened sympathetically.

Jamie’s mother didn’t know it, but her best friend, who also has a daughter in Jamie’s class, had found out from her daughter what had happened to Jamie at school, and she called up Jamie’s teacher to complain and express her concern for Jamie.

The very next morning, the counselor came into Jamie’s classroom and talked to Mrs. Ward, Jamie’s teacher. They then called Jamie over and asked if she would be willing to talk to the class about her family. She said that she would. In describing what happened next, Mrs. Ward was so very pleased with Jamie, who rose to the occasion magnificently. All of her previous shyness in the classroom seemed to fall by the wayside.

Jamie stood in front of the class and told them that it was true, her family has a disease, Huntington’s Disease. Her dad has it, and her older sister has it. She added that she doesn’t have it. She then went onto explain that Huntington’s Disease cannot be caught from anyone else – it is hereditary. Every once in a while Mrs. Ward would interrupt a bit to help lead short educational discussions about genetics, DNA, diseases, hereditary vs. contagious conditions, and asking questions like “If I have blue eyes, can you catch them from me?”

Mrs. Ward said that the room got so quiet as Jamie talked, you could have heard a pin drop. All her classmates were busy listening. After Jamie finished talking, the class started to ask her questions about Huntington’s Disease, what finally happens to people with it, etc. Jamie answered all of their questions matter of factly and as fully as she could. The class expressed both concern and sympathy with Jamie.

At recess the next day, her friends were back to playing with her as if nothing had ever happened. The fifth grader started to say the same things about Jamie’s family, but this time, the other students listened briefly and then just walked away from her, saying nothing. And then they continued playing with Jamie some more.

Jamie had succeeded admirably in educating her fellow students in her class about Huntington’s Disease! Her mom, teacher, and guidance counselor are all very happy and proud of her.

And after the above was written, Mrs. Decker called me up to let me know that Jamie now has asked her counselor and the principal to do the same with the whole school. Even better, she has requested permission to hold a fund raiser for Huntington’s Disease. Thus it seems this story may be a story in progress….check back for updates!

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